Quote:
Originally Posted by jacban62
New to the site. I have a question. My daughter, 21, was determined to have hydrocephalus 15months ago and received a VP SHunt. It has been a reasonably good experience for her overall but several small things have come up and Neurosurgeons office doesn't seem to be a good resource for getting answers....my guess is they don't see a lot of people her age.
1) ongoing faint/blackout type seizure activity continues upon rising but my daughter is able to control it by breathing. This was an original factor in determining she needed a CTSCAN and then MRI to find the hydrocephalus.
CT SCANS all prove to indicate that the shunt is working fine and no answer seems to be available regarding the faint/blackout type seizure activity and doesn't seem to worry any of the DR's other than GenPrac Dr, who referred her back to Neuro Dr.
2) living it Florida, really cold weather is rare. Last week it was cold and she is working outdoors and found to have horrible headaches last week. She is not sick with a cold nor did she have cold symptoms, just a horrible headache that made it very difficult to manage.
Daughter called to make appt to see the Neuro DR and was intercepted by his asst and was told that she did not need to see DR for annual followup or any other reason unless she has an ongoing problem that had not been previously addressed. She just thought she should see him to answer some of these questions but they don't appear to want to see her.
3) Daughter has a blackberry cell phone and has had to have it replaced 5 times in the last year due to phone problems that affect the ability to hear her or for her to hear others. She is a college student living away from home and the phone gives her a lot of problems. I have the same phone and no problems so just curious if cell phone might be affected by the magnets in the VPShunt device.
asked the cell phone provider and they have no clue.
Any help or input her would be appreciated. My daughter is very grateful that she has not had any major issues and her body has accepted this VP Shunt without any real problems, but would love to hear input regarding the above mentioned issues and other people's experiences.
Thanks,
concerned MOM  |
Hey, I think I can give you some answers. I live in Northern Ontario, Canada. Weather up here is often very cold. I, too, have been told no revision to my VP shunt is possible. I'm 53 years old, my shunt was put in at age 41. I suffer from daily headaches and mild seizures. The doctors used to give me narcotic pain relievers, but those were eventually replaced with over-the-counter headache medication. I got hooked on the narcotics and suffered through four weeks of withdrawal. Anyway, to get back to your questions, both headaches and seizures are not uncommon for people with VP shunts. And your doctor is probably telling you the right thing when he says there's not much he can do about it. I have tried several anti-seizure drugs, (Dilantin, Tegretol, etc) but the side effects were worse than the seizures. I now use four .5 mg. tablets of prescription Clonazapam daily to control the seizures and over the counter acetaminophen for the headaches. I asked about a revision to my VP shunt, but two different neurosurgeons have told me the risks involved with such revisions would outweigh the benefits. As for the phone problems, that's one thing I can say I've never had. Mind you, I don't have cell phones, but use cordless and regular phones without problems. Similiar to your daughter, I have had numerous CT scans and MRIs to check the shunt and the drs. say nothing can be done. I'm having some stomach troubles now and doctors are now investigating whether there may be a problem at the bottom (distal) end of the shunt. At any rate, I'm not expecting to get any more help. I'm just continuing to learn to live with what I have. Hope this helps.
Jeff, Kirkland Lake, Ont. Canada